BENTONVILLE, Ark. (KNWA/FOX24) — A Bentonville man is dedicating his life to advocating for people with ALS and trying to help diagnose the disease sooner.
“I’m a movie connoisseur,” said Tommy Edward Culpepper, Jr. “I love movies.”
For Culpepper, movies have always been his saving grace. Even when he was a kid growing up in St. Louis, Missouri.
“I grew up in the Peabody Projects and the home environment wasn’t the greatest,” he said. “Star Wars, Blade Runner, Highlander. Movies like that are excellent getaways for me.”
Until he found himself in a nightmare that started in the doctor’s office.
“He closes the door, sits me down. It was like a movie,” he remembered. “He just goes right into it. He tells me that I have a motor neuron disease.”
He was diagnosed with ALS in February of 2019 at 48 years old. He said he was a very active person at that time, especially enjoying walks and bike rides on the trails around Bentonville.
“It hit me like a ton of bricks,” he said. “I got the, hey, you’re healthy as a horse some weeks prior, so you know it hurts. I felt like I was doing everything right.”
ALS is amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. It’s a fatal neurodegenerative disease that affects nerve cells in the brain and spinal cord. Like many diagnosed with ALS, Culpepper had no prior history. However, he started noticing signs of the disease several years before he was diagnosed.
“In roughly late 2016, early 2017, I started noticing some weird muscle twitches. It didn’t hurt or anything but it was just random,” Culpepper said.
He then started noticing muscle twitches in his left arm, his neck and his left leg. When he was standing at the stove and cooking dinner one night, he said his leg locked up and he fell, nearly hitting his head on the kitchen island. That’s when he and his wife decided to bring it to his primary doctor.
He said the hardest part is no longer being able to do simple things.
“Being able to do that dress yourself, groom yourself, bathe yourself and you know and tie a tie, tie a bow tie and write, feed yourself to be able to walk without assistance,” he said. “I can no longer do any of that.”
But Culpepper isn’t going down without helping other people first. He’s part of a study with an organization called Everything ALS based.
Indu Navar said the group’s goal is to harness the power of technology to help diagnose ALS sooner.
“It takes about 18 months to two years to get diagnosed,” she said. “By the time they get diagnosed, that really is at the end of life, or they probably pass away before they’re able to get a diagnosis.”
They are studying the physiological biomarkers to see if the brain is giving warning signs of the onset of ALS.
“How do you walk, how do you move your hands, how do you speak?” she said. “How do your facial movements change?”
“I am part of the voice study,” said Culpepper. “They’re looking at our voices, trying to determine when it starts to change because of ALS.”
A group of bipartisan congress members is also working to make sure the government is keeping its promises to work towards diagnosing, treating and curing ALS. They sent a letter to the Food and Drug Administration on July 15th.
President Joe Biden signed the “Accelerating Access to Critical Therapies for ALS Act” in December of 2021. It requires the government to advance the understanding of neurodegenerative diseases like ALS. The FDA has to publish and implement a five-year plan to foster drug development, and it has to award grants for research into how to prevent, diagnose, mitigate, treat and cure ALS.
For Navar, this cause is close to her heart. She lost her husband to ALS in 2019 and made a promise to him before he died.
“His suffering is not going to be in vain. This suffering is not going to be a number in this disease,” she said. “His suffering will mean we will get treatment for this disease.”
Culpepper has about a year and a half left in his five-year prognosis, and he wants to make the most of the time he has left.
“I’m blessed and I have the support of my wife, my family and my friends and that all keep me going,” he said. “Plus just advocating for others.”
Culpepper works as an advocate the ALS Wonderland Foundation based in Little Rock.
The non-profit started after Lara Blume McGee lost her father to ALS. She said he was diagnosed in 2009, but disease started to progress in 2012.
“My dad was an athlete, never sick, muscular, always at the gym, he would ride his bike from West Little Rock to downtown to go to work,” she said. “I saw my dad’s body changing. What’s so sad about ALS is it does not affect your mind. Your mind is as sharp as it was before.”
When her dad couldn’t breathe one day, he decided to get a tracheotomy, which intensified the care he required. Until one day he decided he was done and wanted to take it out, which means he wouldn’t survive. She said he died peacefully in 2015.
Now working in her father’s honor, her foundation works to create awareness, support and funding for people with ALS in Arkansas.
“Financially, it takes a huge toll,” she said. “There’s caregivers, there’s medical equipment, there’s medicine. You have to get to your appointment in Little Rock because there’s only one ALS clinic. So all of that cost money.”
They help pay for hotels, wheelchair vans and gas so patients can get to those appointments.
The ALS in Wonderland Foundation is hosting a benefit concert fundraiser on September 15th at the Northwest Arkansas Community College. Click here to learn more about the event.